Friday, September 23, 2011

Picking up the story. Last I left you, we had seen the cardiologist. The week prior to seeing cardiology was NOT fun. We have added some new mechanical members to our family, and along with that, all the ins and outs and breakdowns that come with them. Oh, and the beeping, lots and lots of beeping. Mostly when you are asleep.
This is the oximeter, or pulseox:

It tells us what his oxygen levels are, and what his heart rate is. This particular machine is where we found out that Little Man not only desats, (oxygen goes too low) when he is asleep, he also desats as soon as he lays down. He can not keep his oxygen levels above 92% when he is prone. AND add to all that he is also having heart rates that are below 50 every night. The pulmonologist (sleep/lung doc) said we needed to wake him up every time his heart rate drops below 50. We, mostly my sweet Bald Man did that. Blearily, sleep deprived, tried at least. After we saw the Cardio and found out Little Man's heart was fine, I called the Pulmo and said if it was really important to Little Man's health that his heart rate not drop below 50, they really needed to get us nursing and have someone trained and, most of all, AWAKE, be there to shake the boy when he needed it. No nurse, so we set the alarm to go off at below 40 instead. It hasn't ever gone off at that level yet.

When the pulmo said we needed to start Little Man on oxygen, she shook her head, we shook in our shoes. Between the autism and his behavior problems, we all had our doubts over whether or not our boy would be able to tolerate the oxygen delivery system. A CPAP was out of the question. With all my heart, I believe what happened next to be nothing less than a miracle. We asked for prayers and prayed fervently as we watched the tanks and the oxygen concentrator brought into our home.

(The IV pole is for his feeding pump, which he still uses every day, for fluids and sometimes for food when he isn't eating.)

Little Man can not have the windows down in the car, because he HATES wind in his face. Remember The Swine Flu Debacle of '09? The one where Little Man would NOT wear his oxygen and even hated the blow by? Yeah, well, we remembered it really well. Enough to be afraid of what was ahead of us in terms of getting him used to wearing an oxygen cannula at night. It was very anti-climatic and I mean that in the best way possible. This child, who can't bear to have anything blowing in his face, accepted the oxygen cannula without a blink or a fuss. CREAK, CRASH! That is both his parents falling over in shock, surprise and ultimately, gratitude. Miracles happen.

goofy kid, he couldn't smile while his eyes were open. This is our new normal and he just accepts it. Who knew? If you are scratching your head in wonderment, so is EVERYONE else who knows him! Between the oxygen therapy and the increase in one of his meds, Little Man began to sleep better, much to our relief and sanity.

We have seen the cardiologist, check, everything is fine with his heart. Do they know why he is having bradycardia every night? Nope. Um, maybe it is his VNS he had implanted for his seizures is causing it the cardiologist wondered... So off to Neurology we go. They said it was unlikely, but possible. The only way to know was to turn it off. Oh yeah, I guess I forgot to mention Little Man had started having grand mal seizures at night again. The first since we had the VNS implanted years ago. Turning the VNS off isn't a great idea unless he is inpatient.

So now we had a referral to see the Ear, Nose and Throat doc, (ENT). What I am most afraid of is that they will want to take out his tonsils and adenoids and we will go through all that, operation, and recovery, (with an older kid, ACK!) only to find it didn't help a bit. So, off we went to the ENT and they said.... wait for it..... um, we need to take out his tonsils and adenoids. When I expressed my concerns to the ENT, he said, I had a valid point. And with "syndromey" kids, they have a much lower success rate. I loved that he made up that word, "syndromey" and that he admitted it might not work. He also said that it the least dangerous thing to do, with the greatest chance of helping Little Man, even if it doesn't "fix" the sleep apnea. It will not be a day surgery for our boy, because he is complicated and already having problems breathing, I was informed that we will be being admitted to the PICU. Gut punch. On one hand, I am glad they are going to monitor him closely, but the other hand, my mommy hand, wants to break down and cry for the step up in medical complexity.

So October 5th is the day. I am dreading it. I wish it were much sooner so we could just get it over with. I am not really scared about the surgery, but I am terrified of the recovery. All I can say about it, I am glad he has a g-tube, so he can and will be hydrated, medicated and fed without him having to swallow anything. They will also be doing some more tests with his VNS to see if it is causing the problems and scoping his mouth and throat to check on things. ,

Let me end with every thing else going on, we are enjoying life! Little Man's school and behavior program continue to rock and he is doing really well! In his new school he is a star student and beloved by teachers and students alike. GRATITUDE!

We continue to feel blessed, with our beautiful grand children, with our home, our marriage, our friends and our family. Bumps, and anxiety, but abundantly blessed with so many things!

Thursday, September 22, 2011

I am back, sort of. One of the reasons why I haven't returned to blogging is a sense of guilt. Of the blogs I had abandoned reading, (all of them!). I felt like I couldn't go back to blogging myself, without being a participant in other blogs. But my life has pushed me to return to blogging, regardless of my reading, because things are happening quickly and I really need to keep track of this stuff, for Little Man's sake, my sanity and the journaling aspect of the whole thing.

Life was busy and good from last you heard from me. I continued to work part time, as a big chain store portrait photographer. (I can tell you now, cause I quit in May) I am not sorry I took the job, not sorry I quit. We parted on a high note, with the company being sad I was leaving, so I felt good about that. It was great while it lasted, and I learned what I needed/wanted to learn. Mostly about getting more comfortable with posing people. DONE! In fact, I am tossing around a thought of doing a posing workshop for beginning phototogs.

Moving on to summer. Summer was kind of rough, summers always are with Little Man.Still, it was MUCH better than last summer, because he has his behavior program working with him. He had a tough time, I wasn't getting enough time away from him, it was fairly stressful. Medically he was stable, so we were okay. Fast forward to August and the Boy stopped sleeping. Not the 3-5 days a month he normally does, but every single freaking night. If I had been working it would have killed me, the only survival tool I had was my nap times. Bald Man was just trying to work and bring in the dough to keep us going.

I knew better than to call his doctor, because the last time this happened, she wanted us to do a sleep study, which never got done. I have a great excuse though teacher, I promise! His last sleep study was scheduled while I was doing this. I suppose I don't have a really great excuse for the next year, except I was busy recovering, then moving etc and most of all, he was sleeping fairly well. I really, really don't deal with his stuff very well unless it gets moved to the top of the emergency list. The not sleeping thing did it. I scheduled the sleep study for July 16th.

Little Man did really, really well, or really, really bad, depending on your point of view. He sure showed them he was capable of sleeping for less than 4 hours in an entire night!

The sleep doc informed us it was hard to get information for a sleep study when they don't sleep. Am I the only one who thinks that is just bizarre? Why would we go see a sleep disorder doctor if our kid slept? The tech seemed super concerned about Little Man's breathing and kept coming in, and at one point, put a nasal cannula on him. Yeah, that was the end of the sleeping for all of us.

I went back on Thurs to discuss the results of the sleep study with the doctor. They were only able to use the pulse ox that monitors oxygen and the CO2 monitor for 20 minutes of his sleep study. It was very significant with lots of low oxygen (desats) and high carbon dioxide levels. She said it needed follow up, so we got sent home with a script for overnight oximetry.
The little machine attached to his finger/toe, and recorded the information for the sleep doc to look at.

It was an unpleasant/scary 3 days. Of course it was a HOLIDAY in Utah. I hate Pioneer Day. But that is another post.
Normal levels of oxygen that are good for you are anywhere from 100% to 92%. Anything under 92% is bad. Bad for your body, bad for your heart, bad for your brain.
This range was his good level! ACK! The top number is the oxygen, bottom number his heart rate.

This low is scary, brain damaging low scary:

Mostly he hung out in the mid 80's. Bad numbers. Never knew I could hate numbers below 92 . But I do.
So, finally on Tues, the sleep doc got the report back, and said, um, yeah, would be nice if he could do cpap, but we need to at least start him on oxygen. And along with the low oxygen levels, he is also having nightly episodes of bradycardia.His heart rate is dropping down into the low 40's. So she referred us to a cardiologist too. If you wish to insert a deep, overwhelmed sigh here, it would be appropriate.
The visit with the cardiologist ended up being non eventful, thank you very much! Little Man does not have Pulmonary Hypertension, and the ekg and echo of his heart showed his heart had not sustained any damage from his low oxygen at night.

Friday, January 14, 2011

A quick update and my reason. My laptop died. I am incredibly sad and I feel like I lost my lifeline with the world. Rest in peace Bitty Bytes, you were a good friend! I still have the use of the desktop, but it is very limiting in terms of my life, because I can't use my snuggle time with my boy as cyber time. So poof, there went my two hours of internet time I used to get. I am saving for a new one, and really, truly, I will be back to blogging, eventually.Other news.This Christmas rocked in a HUGE way. Pygmy Child, Brown Boy and Tigger joined us for Christmas. My sweet little grandson took one look at me, held out his arms to meet, and I held him, smiling and crying at the same time. I miss them more than I can say.We have been having issues the last couple of years with my sons. Let me see how to explain it... well, Oldest Son wasn't speaking to Tank. Tank wasn't mad at Oldest Son, but they weren't speaking. JJ wasn't speaking to Oldest Son. Oldest Son was fine with JJ, but they weren't speaking either. ARGH! One of the upsides of my kids is they have always gotten along so well! It was a source of pride and joy to me that my children loved each other so much. Or did. Or something like that. But you know about pride and all that. So, as I knew that all SIX of my kids and their various significant others and my six beautiful grand babies would be here too, I have been planning a family picture. My own personal Christmas miracle was my children all making up with each other and I got my picture! I don't have it back yet, but I will post it when I do. It was a beautiful Christmas, filled with so much love and laughter. Probably my favorite memories of it, is laying in my bed snuggling my boy, listening to the laughter filtering up the stairs as my children enjoyed each other's company. I do feel intensely blessed. Peace and Love, Christmas 2010! I got exactly what I prayed for, for Christmas, I hope you did too!We LOVE living here, Little Man's school and after school program continue to be a huge blessing in our lives as they help us with his problems. I am working and loving it! Just part time, but it has been fun to get so much positive feedback. Feel free to drop me an email, I am probably more reachable that way currently, I do check my email usually in the morning and evening. (Lakotajo2@msn.com)I hope all of you are opening this new year with a sense of hope, and promise, knowing there are so many opportunities out there for you, to be all of who YOU are. MWAH to all of you.